Round Five

I am back at the infusion clinic getting my 5th round of chemo therapy. I had a CT scan this morning to get a look at our progress. I was only able to see the images of my lungs and liver. Those images show that the cancer has been reduced in my lungs although they are still a mess. We are a little confused about my liver. There were two spots that my doctor said did not look like cancer and where the cancer spots were listed as being earlier on my liver she could see nothing so has my cancer spread to my liver? We are just not sure. We did not see my colon, where the original tumor is, but my doctor is confident that it will be improved since it is unlikely that the chemo therapy would affect where the cancer has spread and not the original source. It typically affects the original source better than the places it has spread.

My doctor continues to be amazed at how well I am doing. Once again she commented on my full head of hair. (It looks full anyway, believe me, I really have lost a lot!) She said that if I have not lost it all by now I probably won’t! I can live with that. :-) But for those of you who have given me scarves and hats, never fear. Scarves can be worn for fashion purposes and I still need hats to keep me warm because of my cold sensitivity side effect. So they will get used, and have been already. My weight is also up. That made Kevin very happy but I think my weight gain can stop now. I feel no need to gain anymore! Today was the first time I have been to the doctor without oxygen and when they tested my oxygen level it was 99%. 

I have been feeling great. I have been on two bike rides and am completely off oxygen except at times of increased exertion such as during exercise. I may be the only person riding my bike with an oxygen tank on my back but once again, I pride myself in being different!

I wish I had more to report but for now, so far so good! We are looking forward to Christmas. So many people have been so generous with us, making sure the children will have the best Christmas ever. But of course, the true meaning of Christmas is a celebration of the birth of Jesus Christ. I know that He lives and that He is blessing my life every day. He has blessed me with strength through this trial and with many miracles, for which I am eternally grateful. Thank you for all of your prayers on my behalf. My whole family is grateful. Keep it up, because your prayers are being heard and answered! Have a wonderful and Merry Christmas!

Round Four and all is Well

We are back at the hospital for round 4 of chemotherapy. I am once again in my own little private room - I feel so special, the same private room I had the first time we came here, the one right next door to the bathroom, a place I spend quite a bit of time given all the liquid I am getting pumped into my body :-) - and am hooked up to the pre-chemo drugs. These are what are suppose to keep the nausea at bay. As far as I am concerned, I think they are definitely doing there job!

I was able to see my doctor again today. She is truly shocked and amazed at how well I am doing. She was asking me about side effects and as I was reporting how minor they have been when she suddenly realized I still had a full head of hair. She couldn’t believe it. I wasn’t sure how soon I was expected to lose it all but now I know she expected it by now and I still have a long way to go, unless it all falls out at once.

My weight is up (not something I ever expected to be a good thing in my case, but with all my weight loss at the hospital and the fact that malnutrition is a common cause of death among chemo patients, it is a good sign in this case), my oxygen use and heart rate are down. My white blood cell count and platelets are good. Over all, everything is just peachy! After reviewing my labs and talking with me my doctor just looked at me and asked, “Are you sure we are poisoning you?”

I found out that I will not be joining the trial until the chemotherapy fails. Typically with the RAF mutation the chemotherapy doesn’t work as well. At some point they expect the chemo to stop being productive and at that point I will begin the trial. I was looking forward to the trial because it is targeted therapy. The drugs will go after just the cancer cells, not my whole body like traditional chemo, but they don’t want to take me off of something that is clearly working to try something that is only experimental. So for now I will continue the chemo and given that this is round four, after this weekend I will be 1/3 of the way done!

I asked if there is anything I can not do as long as I feel up to it and have the strength and she said no. In fact, regular exercise is very good for me and will help me feel better. So I think it is time to start daily walks again (lets hope for nice weather) and I really hear my bike calling for me. I know I do not have the strength and stamina to off road it yet and I am not up for my 30 mile doughnut run, (probably a good thing since I do not need the sugar) but it would sure be nice to start riding around the neighborhood again and work my way up to longer rides. With the little oxygen tanks I have now I can easily carry one in a backpack on my back. 

Not only have I gone down in my oxygen use, I have found that when sitting and not doing anything to overly exert myself, I can even go without oxygen! As soon as I try to do things that involve more energy (like shooting hoops or playing laser tag - this knowledge is from recent experience) I get very winded and definitely want my oxygen back, but the fact that I can go without it for extended periods of time is really good news.

And the best news of all, the thing that brings me the most joy, I can sleep lying down! I have spent the past week sleeping in my bed with nothing more than my nice fluffy down pillow and I get a full nights rest. 

Well, I just finished with the pre-chemo drugs and will now have Irinotecan dripping into my blood for the next hour and a half. The nickname of this drug is “I ran to the can.” That is almost what it sounds like when you say the name of the drug and it is suppose to give you such bad diarrhea that you are always running to the bathroom. Fortunately for me I have not experienced that. Sorry for all of you who don’t like the gory details, but I just thought I would have some fun and throw that bit of information in there this time. :-)

I hope you all had a wonderful Thanksgiving and are now experiencing all the joys of the Christmas season. I love this time of year.

Our family (minus Xander who was off backpacking with the scouts) 

enjoying a stay at Myrtle Beach last week.